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Running out of options. Considering divorce

Isaac has NF1, but its a brand new variant never seen before. He has failure to thrive issues, metabolic issues, and hypotonia issues - all of which are not typical NF1 symptoms. He's 18 months and not walking or crawling. He eats 1600+ calories a day and cannot get on the growth chart. Our insurance that we thought was great as completely let us down. They agreed to pay for genetic testing, then refused to pay after it was done - sticking us with $10k. They refuse to pay for AFO's and we would have to pay $80 per visit for PT he desperately needs multiple times a week. We have went thru EI, but they are a total joke. After dragging their feet for 3 months trying to get him set up for AFOs that they would pay for, they passed a law on state level that EI no longer pays for AFOs. I pitched a fit, got an appeal, and as of now they say thay are paying for the set he is getting fit for on monday (I have a sneaking suspicion I am going to end up eathing the bill for that one too). We have been on the waiting list forever for an available PT thru them, but now that we were finally almost at the top of the list, the only PT for the county quits. They do not plan on replacing him.

We are over the income limit for medicaid, hooser healthwise and special childrens health care fund by a a few thousand on the year. I don't know what else to do. I am letting him down because I cannot afford what he needs. The only option we have left is to get a divorce to "impoverish" me so Ike can get on medicaid. This is not what life was supposed to be like. We survived job losses, pregnancy losses, and various other marital bumps, and now after 12 years a marriage my only option to get adiquate care for my little guy is to become a divorced single mom. How can our system be so broken that this is what my life has to become?

Have you tried the shriners? They are suppose to take on cases that need help. I was told that any supplies or appointments not covered by insurance would be covered by them. I'm not sure what else other than that. My husband is a soldier in the Army so they cover everythnig my son needs. I can't imagine having to wonder how I was going to pay for his appointments and therapy. I'm praying for something to work out for you guys. Good luck!

Have you tried the shriners? They are suppose to take on cases that need help. I was told that any supplies or appointments not covered by insurance would be covered by them. I'm not sure what else other than that. My husband is a soldier in the Army so they cover everythnig my son needs. I can't imagine having to wonder how I was going to pay for his appointments and therapy. I'm praying for something to work out for you guys. Good luck!

I **THINK** they might pick up the cost of the next set of AFOs but I think that is all that would be under their scope.

Keep bugging the county for EI services, appeal the county EI decision and insurance decisions and check the income levels for state health insurance. With the new health insurance law, you may have more options now. Talk to your pedi or see if you can talk to an attorney for a free consult

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